undiagnosed neurolgical symptoms

[ccandyrn904]

For the past 3 yrs.  I have had neurological symptoms similar to MS.  In fact, I have all the symptoms of MS without the MRI and spinal lesions.  I have been seeing a neurologist at a MS clinic, who had tried big doses of steroids which have been unsuccessful.  He refuses to try any of the MS medications.  My condition is deteriorating.  Any suggestions as to what could be going on with me?

[MomofTwo83]

I'm sorry you are going through this.  I have been fighting a diagnose for about a year, I'm a little bit closer but haven't been prescribed anything yet.  My suggestion is find another doctor...go get a second, third or fourth opinion.  I hope you have insurance, if you do it's definitely worth it to find a doctor that will help and listen to you.

I was going to this one office where the nurse practioner was very sympathetic to my issues would treat the symptoms and would order all the tests I needed.  I finally went to see the actual doctor since she was always signing my orders and prescriptions, but I never met her.  I wish I never had now, she was in the room for under 10 minutes, told me that it was all in my head and I quote! "exercise 6 days a week and go to therapy".  Which I know wouldn't hurt, that's why I joined a gym, but I broke down and cried!  About 2 weeks later my symptoms went away and I thought, "maybe she's right, I'm nuts".  

About 2 weeks ago my symptoms, plus new ones, came back.  I went to a new doctor and she is lovely.  She was in the room with me for over 30 minutes, tested me on a few things and looked over my past MRI and all my past information from my doctors and neurologist, and said to me "I think you have MS".  She diagnosed me, but didn't want to put me on anything until my neurologist gave me another MRI and spinal tap.  But I was so thankful to hear that it wasn't all in my head, I was really starting to think I was going crazy.

The point of my rambling...get another opinion.  Go find a doctor who will listen to you and want to help you get to the bottom of this craziness.  I know it ***** to go to doctor to doctor and you get discouraged and down, but it is so worth it.  Good luck!

Victoria

[HVAC]

I hear your frustration. I am sorry you are deteriorating. This seldom is a fast process. Have you been seeing a Neurologist the whole three years. Unfortunately your diagnosing starts when you see the MS Specialist not what happened prior in most cases. Sometimes people get lucky and have a quick diagnosis.

What about other test? General Neurological test, reflexes and such. Walking following the finger anything showing up abnormal. They tell more from that then anything. Have you had blood work to rule out other illnesses. There are over 30 MS mimics which have to be ruled out MS is a diagnosis of exclusion. Have you had evoked potential or LP? How many times have you gone to the MS Clinic? Usually they follow you every six months until the tests and the Doctors knowledge tells what it is. You can always get a second opinion. Usually that starts you at square one. So did you have a brain and spinal MRI at the same time or more than one of each over time? They usually do them every six months until something shows up.

The short answer is no one will put you on the MS drugs without more proof. The Drugs are over $2500 a month and insurance companies want proof you have MS a doctors word is not good enough.  

Alex

[poddy]

i fully sympathise with you i to have been plagued with similar problem and getting worse with no firm dx .4 mri scans later.i wish i could offer you some answers but just wanted you to know i understand how desperate it can make you feel. hope you find answers soon  take care from poddy

[figuerpa]

Hi and welcome to the forum,

Since your neurologist refuses to start any of the DMD's then I am guessing that he doesn't think that is what you have. Have you been tested for other neurological diseases that mimic MS to rule them out.

I am not a doctor so I can't say waht is going on with you but have you tried getting a second opinion? Have you gotten any VEP's or an LP to see if that shows anything? What does your neuro seem to think it might be? Sorry for all the questions.

Take Care,
Paula